Behavioral Disturbance in Severe Alzheimer's Disease: A Comparison of Family Member and Nursing Staff Reporting

OBJECTIVE: The purpose of this study is to describe the behavioral disturbances in a group of patients with severe Alzheimer's disease and to compare family members' and nursing staff members' perceptions regarding these behaviors. DESIGN: Cross-sectional survey. SUBJECTS: The 33 subjects resided in nine different long-term care facilities in the Rochester, NY area and were selected from a group of patients enrolled in a longitudinal research study of Alzheimer's disease, based on having severe disease. OUTCOME MEASURES: Caregivers were surveyed with a self-administered questionnaire. The primary outcome measures were the prevalences of 13 behaviors and the magnitude of caregiver concern reported by each group of caregivers. RESULTS: Compared with family members, nurses reported more concern with vegetative behaviors (incontinence, dietary change, and sleep disturbance; P = 0.055). There was statistical evidence that the number of behaviors reported by the nurses decreased with increasing disease severity (P = 0.002). Although not statistically significant, the magnitude of concern reported by the nurses also decreased with increasing disease severity (P = 0.063). Family members and nurses frequently disagreed about the presence of many behaviors exhibited by individual patients, and the responses of caregivers within the same group were highly variable. CONCLUSION: Institutionalized patients with severe Alzheimer's disease continue to exhibit troublesome behaviors although overall behavioral disturbance and concern appear to decrease with increasing disease severity. The assessment of these behaviors and their impact on caregivers can be very subjective, depending in part on the role of the caregiver.